Cracks in the system – Part II

In April 2021, FLSE  published a blog about concerns in how the healthcare system responds to people experiencing multiple and complex needs (MCN). These concerns were logged between January and March 2021, and then reviewed by our client-facing specialist workers together with the Systems’ Change team as part of the OOPS (‘Overcome Obstacles, Provide Solutions’) Project.

Following Up

This blog article captures our learning on this topic between April-June 2021 and acts as a follow up to our first reflection in March. this feels timely for our specialist workers because our front line support services come to a close at the end of June and even though our workers have championed the needs of our clients, there’s still improvements that can be made to the system to ensure people with MCN receive appropriate access to and support in healthcare services.

Similar to previous OOPS project learning, the last three months have shown that people experiencing MCN fall through the gaps and during the ongoing challenge of the Covid-19 pandemic, are missing out on valuable support services.

Concerns raised

Between April and June 2021, the following five concerns were raised by our specialist workers:

  • Dentist registrationa client who wasn’t yet registered with a dentist in East Sussex wasn’t able to be taken on as an NHS patient to get emergency treatment in local dentist surgeries, so needed to access A&E instead

  • Lack of mental health supportone client was really struggling with their mental health and took an overdose on prescription medication. The client wanted to discharge themselves but was kept in the hospital under the Mental Health Act. A mental health assessment took place, but it was decided that the client wasn’t fitting the criteria to be sectioned. Unfortunately, this meant that the case was closed without a referral for further mental health support in the community. So, the client left hospital and continues to struggle with their mental health. 

  • Prescriptionsduring the last 3 months, one of our clients was released from prison but sadly, their prescribed medication was not prepared or organised prior to their prison release. Suffering from seizures due to anxiety, and being relocated to a new area, the client would need to see a neurologist to get these prescriptions. This had not been arranged as part of the release planning and the client did not have access to the necessary medication on their release. Shortly after release, the client had seizures. One of the seizures caused a fall, which led to a broken hand. Due to mobility impairments, the broken hand contributed to the client not being able to wash themselves. Unfortunately, another incident occurred and they broke their leg too.
    The client’s past traumatic experiences of hospitals have been overlooked by the prison medical team. The client is now in supported accommodation. Staff at their supported accommodation are trying to encourage them to go to hospital but so far unfortunately weren’t able to convince them.
    An official complaint has now been submitted to the Lewes Prison medical team.

  • Access and communication with GPs- One client was asked to book a GP appointment by phone to discuss a recent diagnosis. This diagnosis was communicated to the client by letter, without warning or preparation. The client wasn’t aware that his illness has progressed to a terminal stage which came as a surprise. This has meant that the client found out their terminal diagnosis via letter, not in person. Unfortunately the surgery wasn’t able to take their call to find out more because the phone line was busy and so the client asked the Fulfilling Lives specialist worker for help. This particular GP surgery’s rules didn’t allow the worker to make an appointment. Even the client’s social worker got involved and made numerous calls to the surgery to insist on making the appointment on the client’s behalf. The Social Workers persistent calls paid off and an appointment was made. The client then attended their appointment with support of the Specialist Worker.

Worker Reflections

FLSE has delivered client facing support for 7 years and during this time our workers have engaged with healthcare support systems and engaged with feedback and complaints systems. They have concerns about the effectiveness of these mechanisms to serve our client’s feedback and experiences. Two of our workers share their reflections below.

The NHS is really good at single issue solutions but when it comes to more complex/ dual diagnosis it’s a different story. Complaints processes need to be more personal, not one size fits all… because if the NHS isn’t fit for purpose for our clients, where can our clients go? They can’t afford to go private. (…) It is necessary for complaints systems to be simple, accessible and standardised. The current systems, such as PALS, doesn’t have the resources to deal with the number of complaints- especially if they are complex. Advocacy services also seem to be understaffed to help our client’s voices being heard. Resourcing is a big issue.’

‘A personalised approach is needed in which clients are supported to reflect on their experiences in their own words. The complaints’ systems are very fragmented, and our clients unfortunately seem to be bouncing around a lot.’

One of the Solutions

In our experience at FLSE, even if specialist workers understand the process of escalating concerns and are equipped to navigate the system, they often feel that the process is bureaucratic, ineffective, time consuming and slow. There is a sense of distrust that the complaints process has the welfare of patients at the heart.

Experience has shown that our Specialist Workers and clients prefer to solve problems right there and then in an informal way. Unfortunately, informal issues or complaints don’t get recorded and it is difficult to demonstrate impact or changes to the wider complaints system using these informal channels. PALS in Hastings was also identified as difficult to access during Covid-19 because there were no phone numbers and complaints needed to be made in person in the hospital office.

We have asked our Specialist Workers what difference it would make to their clients, if the official systems to challenge and escalate unsatisfactory responses and care would be easier to access.

The answers were pretty clear:

If there’s a simplified and standardised complaints system, that is fully resourced and trained to deal with a multitude of people, it would help clients with MCN to take control of their own care and support. It would empower them to demand better services and give them a voice to share their experiences with the system.

If you would like to hear more about our work in healthcare, then please do get in contact with Michaela and Rebecca in the FL team:

Michaela Rossmann, Systems Change Officer:

Rebecca Rieley, Systems Change Lead:

Cracks in the system?

A deeper look into concerns about the healthcare system’s response to people with multiple and complex needs

Our learning so far

Fulfilling Lives (FL) is committed to supporting Systems Change in Healthcare services and structures for people with multiple and complex needs (MCN). We recognise that it isn’t an easy task to influence large systems like the NHS  but at the same time we would like to encourage workers from all organisations and services to feel confident in escalating concerns about the healthcare system on behalf of their clients as we see this as an opportunity to bring about positive change: it is a way to log learning, share it and look to explore resolutions That is why one of our goals is for ‘Workers who support clients with MCN will be informed and empowered to use official systems to challenge and escalate unsatisfactory responses and care.’

Over the last six years, our specialist workers have supported numerous clients in Brighton and Hove, Eastbourne and Hastings to access primary and secondary healthcare services, including psychological healthcare services.

According to our workers, it has been clear that our clients have low expectations when it comes to healthcare support. This includes how they expect to be treated by staff. Sadly, some of our clients’ experiences only reinforce these low expectations.  For example, one client was transferred from temporary accommodation into a care home setting. Within 24 hrs, the client’s GP cancelled the daily prescriptions without giving the new GP and pharmacy time to transition his care effectively and get the prescription ready. Other examples include stigmatising practice observed by the specialist workers and challenges for clients to access the care they need. Not all our clients’ experiences are negative. On a different occasion, one of our support workers encouraged a client to make an appointment at a GP practice – something they were fearful of doing. On arrival at the surgery the client was reluctant to check in with the receptionist, but with some persuasion he did. In contrast to his expectation the receptionist welcomed him and understanding his anxiety stated we could wait in the quieter areas of the waiting room and she would come and get us when he was called in. Then, the nurse and GP saw this client as a person (not just a file) and this whole experience gave the client the confidence to return for the follow up appointment and make and attend several more.

How we are responding and why bother?

We value our specialist workers and their role to not only find solutions to healthcare issues faced by our clients on a daily basis but we also appreciate their role in advocating on their behalf and raise concerns when they observe concerns. But we needed more data to check if concerns are isolated cases or whether these concerns are more frequent across the local areas and pointed to something more systematic. That is why FL has launched the internal ‘OOPS’ (overcome obstacles, provide solutions) Project in December 2020, where specialist workers can log observed concerns, get peer support through regular Sub Group meetings and identify trends of concerns and solutions to these concerns together.

The Systems Change Team was keen to understand better the concerns that our Specialist Workers have when it comes to supporting clients through healthcare issues. These concerns might not always be about writing an official complaint to a healthcare professional, but to observe daily obstacles within the system. This might range from not being able to make an appointment with a GP on a client’s behalf, to keeping track about hospital discharges happening on a Friday afternoon for those who are homeless. Usually, these frustrations aren’t recorded but we see them as small cracks within the wider healthcare system. 

The OOPS Project launched in December 2020 and between then and early March 2021 we recorded 7 key concerns in Brighton, Hastings and Eastbourne.

Concerns raised

Here are the type of concerns raised:

  • Health provision in prison – Not being able to get an appointment with the mental health assessment team to review our client’s treatment.
  • Access to pharmacies and dispensing during Covid 19 – Dispensing bulk prescriptions, such as methadone, during lockdown instead of individual dosages.Another client has been banned from most pharmacies and the only one our client can access is 2 hrs drive away.
  • Transitions between GP surgeries – One of our clients has been transferred into a care home in a different area which meant that the GP has cancelled all prescriptions within 24 hrs of the move due to being out of area.
  • Access to the perinatal mental health team – One of our clients has had a child removed after giving birth and the perinatal mental health team can’t support the client as they only work with mothers who keep their children.
  • Support staff response to client engagement challenges – A client with a coexisting condition of substance use and mental ill health was referred to SPFT for mental health support. The worker tried to contact the client 3 times but wasn’t able to reach them which resulted in a frustrated email to our specialist worker. However, the client did leave a message for SPFT but the message wasn’t followed up on. 
  • Hospital discharge and follow on rehab – Our team felt there has been a lack of effective joining up of services for a client being discharged from hospital due to alcohol cirrhosis and the rehab services. After the detox in hospital, the transition was not as smooth as it could have been – consuming alcohol could have fatal consequences and this was a high risk.

Raising concerns in the context of the pandemic

It’s now been a year since the pandemic hit the UK and in March of 2020 there was a push to get the homeless communities into emergency accommodation, which created its own issues and problems. Some organisations blanket prescribed a two-week supply of methadone to recipients but ceased face to face appointments, testing and offered limited phone contact.

With most services suspending all face to face interactions with people and an emphasis placed on the wider use of digital devices and phone contact, those with MCN have been left to manage with minimal or no support from the statutory and many non-statutory health services. This has meant that clients and services often relied on FL specialist workers who continued face to face support to escalate concerns and advocate on our clients’ behalf. The pandemic has shown the health inequalities in our society and people experiencing MCN fall through the net. Raising concerns, when resources are thin on the ground, involves having emotional energy and lots of patience as well as time to get them resolved. With FL client-facing work ending in June 2021, FL specialist workers continue to focus on the best outcome for their clients, which in some cases means circumnavigating the system because complaints’ systems are felt to be slow and difficult to navigate.

One of our Specialist workers said: “The NHS closed everything from GP surgeries to wards, with their focus on Covid-19.  Initially it was impossible to contact any NHS services and as time went on this did not get any easier, again there was a desire to make everything online.  I found accessing my GP, virtually, easy but then I have access to a computer and the internet, as do many other people but many of our clients do not have smartphones or access to the internet, many are not computer literate and some find having a conversation by phone to be very distressing.  I supported a client to make an appointment to see his GP, yet despite me speaking with the surgery about the difficulties he experiences when talking on the phone, the surgery arranged a phone consultation, which resulted in my client feeling he had wasted everyone’s time and he did not discuss what he wanted to with the doctor. The media also created fear and a sense that the NHS was not to be disturbed, so many clients and members of the public in general ignored health issues.”

Useful resources when making a complaint

Obviously, sometimes an official complaint needs to be made and there are different guidelines on how to make a successful complaint. We’ve listed ways to do this below to help client-facing workers have a useful summary of the existing support and guidance to do this.

Local hospitals have a Patient Advice and Liaison Service (PALS). This service can give you information about the hospital’s complaints procedure.
It is important that you complain directly to the person or service (such as your GP or dentist). 

A challenge is often finding out what a services complaints procedure is, obviously there is a generic NHS complaints policy.

As a worker or individual, you can also complain to your local Clinical Commissioning Group (CCG), who funds the local healthcare services. This would be after all other options have been exhausted.

The Advocacy People (formerly SEAP) is the commissioned health complaints and advocacy service for East Sussex.  During the Covid-19 restrictions making referrals has become more difficult and at times communication with the service has been limited.

If the above has failed, then there’s also the option to contact your local MP.

Your local Citizen Advice Bureau or Healthwatch can support you and guide you when making a complaint.

The Ombudsman can also help if a complaint is first logged with the provider directly but the outcome hasn’t been satisfactory. They can make independent and impartial decisions on complaints and they have created a useful leaflet with the top 10 tips on making a complaint to the NHS England.
Tips on making a complaint to the NHS in England | Parliamentary and Health Service Ombudsman (PHSO)

What next?

We plan to continue with the OOPS project for a further 3 months and use this learning to further inform our understanding of the gaps and barriers in the healthcare system facing people with MCN. However, we hope to pair this learning with conversations with partners to explore how we can shed greater light on key concerns and start conversations about how we can collaborate to resolve them.

If you would like to hear more about our work in healthcare, then please do get in contact with Michaela and Rebecca in the FL team:

Michaela Rossmann, Systems Change Officer:

Rebecca Rieley, Systems Change Lead:

The Special Allocation Scheme: Our learning to date and recommendations for future developments

Fulfilling Lives South East has reviewed how people with multiple and complex needs experience the Special Allocation Scheme (‘SAS’) and considered the healthcare system the SAS sits in to produce a report on the challenges and benefits of this scheme for patients. This report also shares a set of recommendations for how the Scheme could evolve to better meet the needs of those facing multiple disadvantage.

What is the Special Allocation Scheme (‘SAS’)?

Special Allocation Schemes throughout England were created to ensure that patients who have been removed from a practice patient list can continue to access healthcare services at an alternative, specific GP practice. According to NHS England, patients are placed on the SAS following an incident where a GP or member of staff has feared for their safety or wellbeing, resulting in the incident being reported to the police.

Perspectives of the Scheme

Our Specialist Workers have supported clients on the SAS to access primary healthcare via GPs and to date 12% of Fulfilling Lives South East clients have been active on the Scheme. This had highlighted some challenges clients on the SAS had experienced around the frequency and nature of reviews – when placed on the SAS, some felt they were destined to stay on the Scheme for a long time and for others, they were unaware that reviews should take place. Some clients also felt stigmatised by the Scheme. As such, we wanted to look at this further.

“Some felt they were destined to stay on the Scheme for a long time.”

When we started to research the Scheme, we initially started with a focus on our clients’ experiences and perspectives, however, we soon saw a bigger picture of challenges from different viewpoints and started to also look at the Scheme through the lens of commissioners and GP practices.

Commissioner perspectives: The name of this Scheme has changed over time from Violent Patient Scheme, to Special Patient Scheme to the current name of Special Allocation Scheme (SAS). Fulfilling Lives appreciates the change in name to make it less stigmatising for people on it and recognise how this reflects efforts to move towards a more supportive approach to helping people stay connected to healthcare services.

Locally, the Sussex Clinical Commissioning Group commission the SAS practices and currently there are three GP practices in Sussex delivering the scheme, which explains why some of our clients need to travel long distances to their appointments. However, we understand that not all CCG areas have dedicated SAS practices so the distance travelled here is less than others in England.

We also understand that when SAS services are put out to tender that they do not always generate interest from large numbers of GP practices and as such, Commissioners have to work with a small pool of interested practices.  

Lived experience perspectives: Our Experts by Experience, people with lived experience of MCN and Trauma, consistently emphasise that the most impactful and positive services to them are those that have focussed on the individuality of the person, treated them politely and respectfully and took the time to understand what their needs are. This includes reception staff welcoming them into the surgery.

One of our Specialist Workers however observed the following: “The way staff spoke to my client was unprofessional… I was also saddened by the disrespect shown towards my client and myself, added to this shocked that the security guards thought it was appropriate and acceptable to lock us both in a stairwell.”

The Commissioning team have reassured Fulfilling Lives that SAS practice staff receive training on Conflict Management and Fulfilling Lives are exploring ways that we may share our training on Trauma Informed Practice and Psychologically Informed Environments with these staff groups too.

Clients and patient perspectives:  Reviewing the official regulations provided by the “Primary Medical Care Policy and Guidance: Commissioning a robust SAS” it recommends a variety of reviews that people placed on the SAS should receive. However, nowhere in the document does it state that reviews are held together with patients and decisions regarding their continued placement on the scheme are made without their involvement. This is something our clients and Experts by Experience would like to see changed.

Another Specialist Worker says that “My impressions of the SAS in Brighton are that it is very good. Clients are given a 20-minute appointment, usually at lunchtimes and depending on what type of appointment they have may be encouraged to attend with a professional. To some degree I have to support clients to access the SAS and have their healthcare needs met. I have to remember that we are fortunate in Brighton in that health services for people who have MCN are largely good, do reflect upon how they could improve and do try and be fit for purpose. I think it really helps if I am able to see the positive side of a service such as the SAS because as well as acknowledging the negatives that the client sees about a service, it is my role to motivate them enough to attend appointments. Some clients like the surgery and others are less keen on it. Perhaps there is an element of shame attached to having to attend a surgery under the scheme but in my mind the scheme allows clients to have access to a GP instead of just being barred. ”

“Clients…feel they don’t receive the information about what it means to be placed on the SAS and information about how to get back into the mainstream healthcare services.”

Another challenge some clients experience is that they feel they don’t receive the information about what it means to be placed on the SAS and information about how to get back into the mainstream healthcare services. We understand that it is tricky for GPs to send information by post when some clients live in temporary accommodation and move around a lot. This has been identified as the main obstacle to undertake reviews and one of the reasons why some people stay on the SAS longer than anticipated. We also know from experience that clients change their phone number regularly and that a multi-disciplinary approach is needed to maintain communication and engagement with clients.  Our Specialist Worker observed that “there is an opportunity to communicate directly with patients when they attend appointments but sadly this does not appear to happen consistently and a chance to review how the patient could work towards ‘step down’ …is missed.”

‘Step down’ – a path back to mainstream primary healthcare access points?

Through research into the SAS and conversations with Commissioners we have learned of  a ‘step down’ system to support patients leave the SAS by keeping these patients connected to the SAS practice after being taken off the Scheme to provide continuity, independent of whether they are registered there or live in the area.

Through our work with people who have multiple and complex needs we view this ‘step down’ approach positively as we know that building, sustaining and enabling longer-term relationships with support services is important.

Recommendations for the future

Fulfilling Lives South East sees the potential of the SAS to be a gateway for people with multiple and complex needs into the mainstream NHS healthcare services, especially for those who are often thought of as ‘hard to reach’ and those who feel excluded from mainstream NHS services.

That is why we would like to recommend the following:

  • Create one consistent model of best practice on how SAS practices should be set up.
  • Have clear guidelines on the frequency and content of patient reviews and share these guidelines widely
  • Involve the patient proactively in their own review to have their voice heard.
  • Offer therapeutic services for people with multiple complex needs to support re-integration into the mainstream primary healthcare routes.
  • Support key staff in the SAS practices with training in Trauma Informed Practice and Psychologically Informed Environments.

  • The summary of our research and context of these recommendations can be found in our co-produced report Special Allocations Scheme: Recommendations for Systems Change

Who are Fulfilling Lives South East?

Fulfilling Lives has supported clients with Multiple and Complex Needs (MCN) since the start of the project in 2014. Funded by the National Lottery Community Fund, as one of 12 partnerships across the UK, we are funded to:

(a) provide intensive support for people experiencing multiple disadvantage,

(b) involve people with lived experience of multiple disadvantage at all levels and,

(c) challenge and change systems that negatively affect people facing multiple disadvantage.

Fundamental to the project’s ethos is the belief that the involvement of people with lived experience of complex needs is an essential part of the solution and to promote trauma informed practices. Further information about our project can be found here

How to create accessible primary healthcare for people with multiple and complex needs

Fulfilling Lives South East has collaborated with the University of Brighton to explore how to maximise access to primary healthcare for people with multiple and complex needs. The research informed a report which highlights approaches to improving access which work, based on academic research and the experiences of local client-facing workers.

The problem with primary healthcare accessibility

People who have faced disadvantages such as mental health issues, homelessness, substance misuse issues and offending histories are much more likely than an average UK citizen to require primary healthcare for a range of long term conditions. However, evidence suggests they are much less likely than average to receive it – with indicators such as low life expectancies and disproportionately high access to A&E building a picture of the gap between need and adequate provision.

The solutions for people with Multiple Complex Needs

The research conducted by student research Inja Vetter indicated that the following approaches work well:

1. Intensive outreach programs carried out by multi-skilled teams to see people in the community

2. ‘One-stop-shops’ which consolidate social and health care services to provide holistic care in one place

3. Staff knowledge & awareness– informing workers about the challenges people with multiple and complex needs face, and skilling up the workforce in trauma-informed approaches 

4. Flexibility in services with making appointments, appointment times and locations. 

5. Continuity of care Striving for linked social care and health care networks which ensure close communication and collaboration 

6. Secure, long term funding to achieve meeting the health care needs of people with MCN in an appropriate way

Inja reflected on her reaction to the findings as they emerged:

‘Thematically, what surprised me most is how well health inequalities for people with MCN and many other groups are researched and documented. Seeing the so-called ‘science-practitioner gap’ reinforced my belief that it is really important to push for systematic changes around the provision of (primary) healthcare.’ – Inja Vetter

What next?

This research will now be used to identify the ‘bright spots’ within primary healthcare systems. Our systems change team will look to collaborate with local partners to celebrate these areas and explore how we can nurture and grow these further. The research author supported the continuation of building strong links with practice and academic research in the future:

‘Working with Fulfilling Lives was a wonderful partnership experience. It was a boost to my motivation to experience Fulfilling Lives as a place where scientific research and practical experiences really come together, inform each other and are applied in order to create change.’ – Inja Vetter

If you are interested in working with us in this area, please contact Rebecca at The full report is out now and available to download here:

Author – Kerry Dowding